In honor of 🔥Disability Rage Month🔥 let’s talk about the misogyny underpinning the #GreatestMEdicalScandal. If you haven’t watched, the Golden Girls #MECFS storyline is a must-see highlighting the misogynistic BS ppl w/ ME have dealt w/ for decades:

youtube.com/embed/vVyLZTKD…

https://twitter.com/phillyphile215/status/1789783917697851845

The most infuriating thing about our girl Dorothy’s diagnostic odyssey back in 1989 is <<how very little>> has changed over the last 35 years 😫

This 1990 article from The Guardian tells the story of a 12 year old w/ severe ME who was taken from his family, kept in hospital against their will, & dunked in a pool to make him swim despite being too weak & ill to move. Another modern day witch drowning #GreatestMEdicalStory

https://twitter.com/rfh1955/status/1322480990439280642

“Ean Proctor lost his voice in October 1987 when he was 12. It still has not come back so he cannot talk about his battle against Myalgic Encephalomyelitis, the disease which deprived him of speech & left him almost completely paralysed for two years.”

#GreatestMEdicalScandal

My partner has Cov1d again. 3rd time in 8 months. And he changed his whole life to avoid it for me. Masks indoors w/ a fit tested respirator, avoids crowds, quit teaching, no restaurants/movies, no socializing in ppl’s homes other than a few times a year when he travels w/o me. But almost every time he takes a seemingly small risk (driving (masked) with a friend, having coffee on a bench with a client, staying at a friend’s house overnight), he ends up with Covid.

This is so unsustainable.

We need to invest in the longtime ME research NIH has historically blacklisted or we could easily watch $10B disappear without actually solving LC. Moonshot legislation needs to explicitly address & correct NIH’s institutional bias against funding bio research into ME.

https://twitter.com/davidtuller1/status/1779489617361748235

I’ll be voicing my concerns & hope all #pwME & LC will too. Feedback on the draft proposal should be sent to LongCOVIDComments@help.senate.gov. Due by 4/23.

The draft legislation proposal is available here: sanders.senate.gov/wp-content/upl…

Low processing speed has had a profound impact on my ability to function, my relationships, & my “me-ness.”

https://twitter.com/ahandvanish/status/1616998961725820930

Decision-making (which you have to do tens of thousands of times a day) becomes slower, more laborious, & more dangerous. Everything from driving to talking to moving my body to figuring out what to eat becomes harder. Things that used to be easy & automatic… aren’t anymore.

On the last day of each month people w/ #MyalgicEncephalomyelitis (#ME #MECFS) & our allies are invited to share art of endangered flowers to call attention to both ME & these often ignored victims of the extinction crisis.

#MillionsMissingFlowers #togetherendangered For February I painted the flame azalea or Rhododendron calendulaceum, which grows in the Appalachian Mountains near where I grew up in Virginia. 2/

CW: suicidal ideation

I’m about a month out from my last “episode” so I’m gonna go ahead & call it. I tried Singulair/Montelukast this fall for shortness of breath. It’s a leukotriene inhibitor used to treat asthma & MCAS. It also has a black box warning for suicide. Within 5 days I felt frighteningly suicidal, panicked, & desperate to get out of my body & off of this earth. I was extremely disturbed by the violence & forcefulness of these thoughts, which only fueled my panic further.

The first time someone recommended "brain retraining" to me I was hopeful. I bought the DNRS program & faithfully did the guided meditations while walking in the woods every day, ignoring my dizziness, cognitive confusion, & trembling muscles. I, predictably, got much worse.

https://twitter.com/_diatoma/status/1734659041400397903

Since then almost everyone close to me has recommended it: my doctor, my husband, my therapist, my mom, my friends. If I have to hear another person try to sell me on this pseudoscience snake oil I will explode.

Almost everyone who knows I have ME/CFS has at some point suggested it may be psychological & that I should try meditation/therapy/brain retraining (all of which I’ve already tried. I continue to meditate & do therapy bc it’s good for everyone, but it’s obviously not a cure). I weather people’s unsolicited advice as gracefully as I can manage. What I can’t weather gracefully are the people who are close enough to me to know better, yet who continue to psychologize my disease, claiming they “just want to help.”

Hi, I'm Emily! I used to be a documentary filmmaker, teacher, environmental activist, artist, adventurer, wife, friend. Now I spend 22 hours a day in bed, too sick to interact w/ the world, too sick to watch films, much less make them.
#MillionsMissing
#MECFS
#LongCovid
1/ Over the past 3 years of the pandemic, millions more have joined me in this abyss of illness. We’ve been swept under the rug by the government, doctors, & society. We need research funding, financial support, treatments, a cure. We need our lives back.
#StillSickStillFighting
2/